A Swiss digital Delphi study on patient-reported outcomes.

AIMS OF THE STUDY: Health-related quality of life (HRQoL) indicators are patient-reported outcomes (PROs). PROs are defined as any report of the status of a patient's health condition or health behaviour that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else. Despite Swiss national bodies (FOPH, FMH) recognising the potential of PRO measures (PROMs) for improving the health system, no consensus has yet emerged regarding a generic PROM framework or specific domains for practical uptake. The aim of the present digital Delphi study was to generate a consensual Swiss expert opinion on a generic PROM framework, measurement domains and items from a validated instrument (PROMIS [Patient-Reported Outcome Measurement Information System]) as well as on the role and implementation of PROs in the Swiss healthcare system via PRO consensus statements. METHODS: A 4-round digital Delphi study was conducted among Swiss PRO stakeholders. A total of n = 21 Swiss PROM stakeholders completed round 1 surveys on the PROM framework. During the stakeholder meeting, n = 11 stakeholders completed round 2 and round 3 surveys pertaining to measurement domains and items, respectively. In-meeting key questions and discussion items were extracted, consolidated into statements and subjected to consensus voting in a round 4, post-meeting survey. Consensus was defined as ≥70% agreement. RESULTS: Pre-meeting, agreement was reached for the tripartite framework of physical, mental and social health (95-100%). During the meeting, agreement was reached on all seven measurement domains of a generic PROM (PROMIS-29), ranging from 80% (Anxiety, Sleep Disturbance) to 100% (Pain Interference, Depression, Ability to Participate in Social Roles). Consensus was also reached for all PROMIS-29 items, with average domain consensus ranging from 83% (Sleep Disturbance, Ability to Participate in Social Roles) to 100% (Depression). Finally, four post-meeting consensus statements regarding PROs in Switzerland reached agreement. CONCLUSIONS: A Delphi method can help identify areas of need regarding PROMs in Switzerland. The current study identified a generic PROM as a missing quality indicator for the Swiss national health system's value. A pre-meeting informational briefing, expert presentations and moderation supported three voting rounds to help identify PROMIS-29 as a PROM framework (round 1), measurement domains (round 2) and items (round 3) as a basis for further validation research. The empirical agreement among diverse stakeholders supports broad consensus towards preliminary feasibility of integrating generic PROMs into the Swiss health system based on content relevance.

A case for preference-sensitive decision timelines to aid shared decision-making in intensive care: need and possible application.

In the intensive care unit, it can be challenging to determine which interventions align with the patients' preferences since patients are often incapacitated and other sources, such as advance directives and surrogate input, are integral. Managing treatment decisions in this context requires a process of shared decision-making and a keen awareness of the preference-sensitive instances over the course of treatment. The present paper examines the need for the development of preference-sensitive decision timelines, and, taking aneurysmal subarachnoid hemorrhage as a use case, proposes a model of one such timeline to illustrate their potential form and value. First, the paper draws on an overview of relevant literature to demonstrate the need for better guidance to (a) aid clinicians in determining when to elicit patient preference, (b) support the drafting of advance directives, and (c) prepare surrogates for their role representing the will of an incapacitated patient in clinical decision-making. This first section emphasizes that highlighting when patient (or surrogate) input is necessary can contribute valuably to shared decision-making, especially in the context of intensive care, and can support advance care planning. As an illustration, the paper offers a model preference-sensitive decision timeline-whose generation was informed by existing guidelines and a series of interviews with patients, surrogates, and neuro-intensive care clinicians-for a use case of aneurysmal subarachnoid hemorrhage. In the last section, the paper offers reflections on how such timelines could be integrated into digital tools to aid shared decision-making.

Patient narratives - a still undervalued resource for healthcare improvement.

In recent years, patient narratives have attracted increasing attention as a valuable source of insights into the subjective experience of healthcare. This paper outlines a best-practice approach to the collection, analysis, and use of patient narratives, based on current literature and on the experience of developing the Swiss Database of Individual Patient Experiences (DIPEx). The DIPEx project aims to provide a systematic and methodologically rigorous collection of patient narratives on various health situations and topics. This paper presents and details the DIPEx approach as a current standard in the field, offering a comprehensive overview and discussing the potential uses and benefits of patient narratives: improve healthcare practice, empower patients and caregivers, help structure better communication in healthcare, and contribute to medical teaching and learning.

Aneurysmal Subarachnoid Hemorrhage and Clinical Decision-Making: A Qualitative Pilot Study Exploring Perspectives of Those Directly Affected, Their Next of Kin, and Treating Clinicians.

BACKGROUND: Exploring the experience and impact of aneurysmal subarachnoid hemorrhage (aSAH) from three perspectives, that of those directly affected (AFs), their next of kin (NoK), and treating clinicians, is a way to support and empower others to make informed medical decisions. METHODS: In a Swiss neurosurgical intensive care unit (ICU), eleven semi-structured interviews were conducted as part of a Database of Individual Patient Experiences (DIPEx) pilot project and thematically analyzed. Interviews were held with two clinicians, five people experiencing aSAH, and four NoK 14-21 months after the bleeding event. RESULTS: Qualitative analysis revealed five main themes from the perspective of clinicians: emergency care, diagnosis and treatment, outcomes, everyday life in the ICU, and decision-making; seven main themes were identified for AFs and NoK: the experience of the aSAH, diagnosis and treatment, outcomes, impact on loved ones, identity, faith, religion and spirituality, and decision-making. Perspectives on decision-making were compared, and, whereas clinicians tended to focus their attention on determining treatment, AFs and NoK valued participation in shared decision-making processes. CONCLUSIONS: Overall, aSAH was perceived as a life-threatening event with various challenges depending on severity. The results suggest the need for tools that aid decision-making and better prepare AFs and NoK using accessible means and at an early stage.

[Care counselling - Lessons learnt from an expert survey on the supply situation in the district of Lörrach]. / Pflegeberatung ­ Lessons learnt aus einer Expert*innenbefragung zur Versorgungssituation im Landkreis Lörrach.

BACKGROUND: There is a broad spectrum of care counselling offers. Various professional groups, each with different qualifications and objectives, carry out the counselling, and the accessibility and the service offers of the counselling centres vary greatly. The aim of this study was to develop recommendations for persons in need of care and their relatives in order to a) create more transparency and knowledge about the spectrum of care counselling for those in need of care and their relatives as well as the professionals in the field, and b) to optimize the structures of the heterogeneous spectrum of care counselling by means of a qualitative study with experts using the example of the district of Lörrach. METHODS: Based on a systematic literature research, 21 semi-structured expert interviews of five different stakeholder groups (representatives of persons in need of care and their relatives, service providers, suppliers, county and municipalities, politicians) were analyzed. All interviews were digitally recorded and transcribed verbatim. Data analysis was conducted based on the structuring content analysis according to Kuckartz. RESULTS: Nine main categories emerged from 21 experts' transcripts. The findings from four main categories relating to the criterion of transparency are shown below as examples. The experts report on numerous obstacles that they recognize for persons in need of care and their relatives in order to be able to take advantage of care counselling in a highly complex health care system. For people with no background knowledge of the health care system, the current care counselling structure is not transparent, and it is almost impossible to differentiate between the various care counselling services, some of which have different tasks to fulfil. The basic topic-specific advisory structure is characterized by multiple uncoordinated structures, also with regard to care, which makes it difficult even for professionals to gain an overview and orientation towards a targeted use of the counselling services for those seeking advice, such as persons in need of care and their relatives. The experts reaffirm the importance of creative ideas and different channels, taking into account generational differences and different information behaviour among those seeking advice, in order to increase the provision of information and the visibility of care counselling services. Low-threshold, citizen-oriented, regional and barrier-free access to information must be set up for persons in need of care and their relatives. At the district level, a central platform should be established primarily aimed at professional users which many want to be located at the care support center or, for example, at the district office where all threads come together and which includes all care counselling services and their areas of activity. DISCUSSION AND CONCLUSION: Overall, the study results reveal numerous systemic weaknesses in the spectrum of care counselling services and in the care system, which in this study were limited to the regional research field and considered from the perspective of care management. The analysis of the results highlights the importance of optimizing the structural quality of care counselling. A need to reform social legislation and, above all, long-term care insurance (Eleventh Book of the Social Code), can be derived from the interview analysis and should be further investigated in a nationwide survey.

Interprofessional Collaboration in Fall Prevention: Insights from a Qualitative Study.

(1) Background and objective: to explore the experiences of Swiss health care providers involved in a community fall prevention pilot project on barriers and facilitations in interprofessional cooperation between 2016 and 2017 in three regions of Switzerland. (2) Methods: semi-structured interviews with health care providers assessed their perspective on the evaluation of jointly developed tools for reporting fall risk, continuous training of the health care providers, sensitizing media campaigns, and others. (3) Results: One of the project's strengths is the interprofessional continuous trainings. These trainings allowed the health care providers to extend their network of health care providers, which contributed to an improvement of fall prevention. Challenges of the project were that the standardization of the interprofessional collaboration required additional efforts. These efforts are time consuming and, for some categories of health care providers, not remunerated by the Swiss health care system. (4) Conclusions: On a micro and meso level, the results of the present study indicate that the involved health care providers strongly support interprofessional collaboration in fall prevention. However, time and financial constraints challenge the implementation. On a macro level, potential ways to strengthen interprofessional collaboration are a core element in fall prevention.

First Insights into Barriers and Facilitators from the Perspective of Persons with Multiple Sclerosis: A Multiple Case Study.

Multiple Sclerosis (MS) is a complex, lifelong disease. Its effects span across different areas of life and vary strongly. In Switzerland, there is an intense discussion on how to optimize quality of care and patient safety. Patients should be more involved in the management of health care to improve the quality of care from the patient's perspective and form a more comprehensive perspective. This multiple-case study explores the question of how persons with MS experience and describe functioning related barriers, facilitating factors, and ethically relevant conflicts. To address this from a comprehensive perspective, the MS core set of the International Classification for Functioning, Disability, and Health (ICF) is used as theoretical framework. To explore barriers, facilitators, and relevant ethical issues, different narrative sources were used for thematic analysis and ICF coding: (a) MS transcripts from DIPEx interviews and (b) an autobiographical book of persons living with MS. Insights that were meaningful for daily practice and education were identified: (a) understanding the importance of environmental circumstances based on narrative sources; (b) understanding the importance of a person's individual life situation, and the ability to switch perspectives in the medical field; (c) respect for PwMS' individuality in health care settings; (d) creating meaningful relationships for disease management and treatment, as well as building trust.

"What Do You Need? What Are You Experiencing?" Relationship Building and Power Dynamics in Participatory Research Projects: Critical Self-Reflections of Researchers.

Participatory approaches create opportunities for cooperation, building relationships, gaining knowledge, rethinking, and eventually changing power structures. From an international perspective, the article looks at the historical development of different participatory approaches in which building relationships and managing the balance of power between persons engaged in participatory research are central. The authors present and critically reflect on four research projects to show how they understood and implemented participatory research in different ways and what they have learned from their respective experiences. The "PaSuMi" project worked in the context of addiction prevention with migrants and provides a glimpse into different contexts of participatory research. The initiator of the study "Back into life-with a power wheelchair" works with post-stroke individuals who use the assistive device in community mobility and reflects on the shifting and intertwining roles of participants. In the research project "Workshops for implementation of expanded community nursing", new professional roles for nurses in community nursing were developed; here limitations to participation and ways to deal with them are illustrated. Finally, the "DIPEx" project deals with challenges of enabling participation of persons with multiple sclerosis via narrative interviews on the experience of health and illness. All examples underline the necessity of a permanent reflection on relationships and power dynamics in participatory research processes.

Professional Identity Formation in Health Promotion Practitioners: Students' Perspectives during an Undergraduate Program in Switzerland.

The health promotion (HP) community advocates for capacity building, quality assurance and political awareness of HP. Professional identity (PI) is of great relevance to these goals as persons who strongly identify with their profession better adopt their professional role, raising the quality, competence and common values within a professional group. However, investigations on the HP workforce are missing. In order to investigate PI formation in HP professionals, a longitudinal study was conducted with two student cohorts of a Swiss HP and prevention undergraduate program. Using a qualitative approach, focus groups were conducted at the beginning and end of the undergraduate program. Data were transcribed verbatim and condensed using thematic analysis. The results highlight the complexity of the HP's professional profile. While students experienced difficulties to capture the profile at the beginning of the program, at the end they developed an understanding of it. The practical experience within work placements helped students to grasp the profile and specify their future professional role. Several behavioral, cognitive and motivational aspects were identified that influence HP students' PI formation and can be fostered. For instance, universities can commit to public relations for HP practitioners and support the PI formation throughout the study program.

Case vignettes for simulated patients based on real patient experiences in the context of OSCE examinations: workshop experiences from interprofessional education.

Background: Patient-centredness (PCN) is an increasingly demanded objective in health care and has gained importance for the care situation, for research, and the education of healthcare professions. The literature shows that the term PCN is not uniformly defined. Key aspects for the concept of PCN can be found in the integrative model and its dimensions by Scholl and colleagues (2014), which are incorporated into the acquisition of competencies in Objective Structured Clinical Examination (OSCE) examination formats. The inclusion of subjective experiences of persons directly affected in health-related situations is recognized as an important factor for continuous improvement in health care. In the interprofessional education of healthcare professions, subjective experiences serve as a starting point in relation to OSCE exams. In this context, the project "DIPEx" "Database of Individual Patients' Experiences" stands for the systematic collection and evaluation of subjective experiences of illness using scientific methods. Aim: The aim of this interprofessional training workshop was to show how PCN can support the writing of case vignettes based on real experiences from systematically collected narratives within the DIPEx project, as well as the preparation of simulation subjects for OSCE examinations in the healthcare professions. Methods: Interactive, moderated workshop with two theory-based input presentations on the systematic development of interprofessional case vignettes based on four steps, group work with synthesis in the form of statements, and a concluding outlook. Results: With regard to the aims of the workshop, the synthesis included results at two levels: exemplary results on aims not explicitly addressed: Interprofessional teaching is full of presuppositions and requires clarification of four different perspectives in advance to be included in case development;exemplary results on explicitly addressed aims: Listening to and incorporating the real-life experiences and narratives of persons directly affected in health-related situations and their families was seen as an important learning aspect for PCN in relation to the practitioner-patient relationship. Five key statements on explicit aims for case development involving PCN emerged from the group work. Conclusion: Competency-based interprofessional education of health professionals and PCN can benefit from real patient narratives of health and illness as simulated patients can portray roles in OSCE formats in a realistic and convincing manner.

A Swiss Health Care Professionals' Perspective on the Meaning of Interprofessional Collaboration in Health Care of People with MS-A Focus Group Study.

Multiple sclerosis (MS) is a chronic, inflammatory autoimmune disease of the central nervous system mainly of adults ranging from 20 to 45 years of age. The risk of developing MS is 50% higher in women than in men. Most people with MS (PwMS) experience a spectrum of symptoms such as spasticity, continence dysfunctions, fatigue, or neurobehavioral manifestations. Due to the complexity of MS and the variety of patient-centered needs, a comprehensive approach of interprofessional collaboration (IPC) of multiple health care professionals (HCP) is necessary. The aim of this qualitative study was to explore the meaning of IPC in the comprehensive care of PwMS from a HCP perspective. Focus groups (FG) with HCP were conducted, recorded, and transcribed verbatim. The sample contained HCP from three MS clinics in different phases of care and rehabilitation. Four main categories emerged: (a) experience with IPC, (b) relevant aspects for IPC in patients' treatment, (c) differences in in- and outpatient settings, and (d) influence of patient perspective. IPC plays a crucial role in HCP perspective when treating PwMS, which can benefit from an IPC therapeutic approach because HCP work together in a patient-centered way. The inpatient setting of HCP strongly supports the implementation of IPC. This prerequisite does not exist in outpatient settings.

Risks and Benefits of Web-Based Patient Narratives: Systematic Review.

BACKGROUND: Patient narratives are illustrative, individual accounts of patients' experiences with certain health conditions. Web-based patient narratives have become widely available on the internet and in social media, as part of electronically available patient decision aids or Web-based databases. In recent years, the role of patient narratives as a source of information, insight, and support for both health care users and providers has increasingly been emphasized. Although the potential impact of patient stories has high immediate plausibility, it is of interest to know if this impact can be captured in quantitative studies. OBJECTIVE: This review aimed to evaluate whether research-generated Web-based patient narratives have quantifiable risks or benefits for (potential) patients, relatives, or health care professionals. METHODS: We searched the following databases from August 2017 to March 2019: Medical Literature Analysis and Retrieval System Online, PsycInfo, Sociological Abstracts, Web of Science, and EMBASE. Titles and abstracts of the retrieved studies were reviewed and assessed for the inclusion and exclusion criteria. Papers were included if they studied the following: (1) (potential) patients, relatives, or health care professionals; (2) the effects of Web-based patient narratives that were generated scientifically (eg, through qualitative research methods); and (3) were quantitative studies. Furthermore, 2 authors independently performed an assessment of the quality of the included studies using a validated checklist. RESULTS: Of 4226 documents, 17 studies met the inclusion criteria. The studies investigated 10 different sources of Web-based patient narratives. Sample sizes ranged from 23 to 2458. The mean score of the quality assessment was 82.6 (range 61-100). Effects regarding five different purposes were identified as follows: provide information, engage, model behavior, persuade, and comfort. We found positive effects in every category and negative effects in one category (persuade). Several of the reported effects are rather small or were identified under specific experimental conditions. CONCLUSIONS: Patient narratives seem to be a promising means to support users in improving their understanding of certain health conditions and possibly to provide emotional support and have an impact on behavioral changes. There is limited evidence for beneficial effects on some outcomes. However, narratives are characterized by considerable heterogeneity and the investigated outcomes are hardly comparable with each other, which makes the overall judgment difficult. As there are numerous possible measures and purposes of narratives, quantifying the impact of Web-based patient narratives remains a challenge. Future research is needed to define the optimal standards for quantitative approaches to narrative-based interventions.

From the person's perspective: Perceived problems in functioning among individuals with spinal cord injury in Switzerland.

OBJECTIVE: To report the main problems in functioning cited by people with spinal cord injury in Switzerland. STUDY DESIGN: Post-coding analysis was conducted based on the open-ended question, "What causes you the most problems since your spinal cord injury?" from the Starter Module of the community survey of the Swiss Spinal Cord Injury Cohort Study, administered between September 2011 and March 2013. STUDY PARTICIPANTS: Out of 3,144 eligible subjects, 1,762 answered the open-ended question and cited problems. METHODS: Thematic analysis was used, based on the coding system from the International Classification of Functioning, Disability and Health. RESULTS: The study identified the 10 problems cited most by the participants, and the 5 most-cited problems mentioned by participants from each of the relevant subgroups subdivided by factors including gender and aetiology. Problems linked to complications in body functions (e.g. pain), activities and participation (e.g. leisure) and environment (e.g. design of public buildings) were reported as important. CONCLUSION: This study contributes to priority setting in spinal cord injury by accounting for the person perspective within a large-scale quantitative survey. The results support the value of a comprehensive approach to spinal cord injury.

Therapists' Perspective on Virtual Reality Training in Patients after Stroke: A Qualitative Study Reporting Focus Group Results from Three Hospitals.

Background. During the past decade, virtual reality (VR) has become a new component in the treatment of patients after stroke. Therefore aims of the study were (a) to get an insight into experiences and expectations of physiotherapists and occupational therapists in using a VR training system and (b) to investigate relevant facilitators, barriers, and risks for implementing VR training in clinical practice. Methods. Three focus groups were conducted with occupational therapists and physiotherapists, specialised in rehabilitation of patients after stroke. All data were audio-recorded and transcribed verbatim. The study was analysed based on a phenomenological approach using qualitative content analysis. Results. After code refinements, a total number of 1289 codes emerged out of 1626 statements. Intercoder reliability increased from 53% to 91% until the last focus group. The final coding scheme included categories on a four-level hierarchy: first-level categories are (a) therapists and VR, (b) VR device, (c) patients and VR, and (d) future prospects and potential of VR developments. Conclusions. Results indicate that interprofessional collaboration is needed to develop future VR technology and to devise VR implementation strategies in clinical practice. In principal, VR technology devices were seen as supportive for a general health service model.

[Potential analyses for research on occupational therapy-led training of activities of daily living in stroke patients]. / Potenzialanalyse zu ergotherapeutischem Alltagstraining nach Schlaganfall.

HEALTH PROBLEM: Every year about 200,000 people in Germany suffer from a first stroke and 65,000 persons from a recurrent stroke. Stroke is one of the major causes of acquired life-long disability. It is associated with multiple limitations in functioning, activities of daily living and social participation. People with stroke must develop and apply considerable coping and adaptation strategies to manage the consequences of disabilities in daily life. Insufficient adaptations may result in social isolation, depressive disorders, need for medical and nursing care and subsequently lead to increasing costs for care. Thus occupational therapy-led treatment addressing social participation as well as skills training, adaptation strategies and assistive technology for activities of daily living is essential for stroke patients after hospital discharge. CORPUS OF EVIDENCE: Based on nine randomised comparisons, a Cochrane review from 2006 revealed that occupational therapy-led training after stroke had positive effects on personal activities of daily living (8 studies; 961 participants; 0.18 SMD; 95 % CI [0.04 to 0.32]), on extended activities of daily living (6 studies; 847 participants; 0.21 SMD; 95 % CI [0.03 to 0.39]), and on poor outcome (7 studies; 1,065 participants; odds ratio 0.67; 95 % CI [0.51 to 0.87]). However, direct implementation into the German healthcare context is not recommendable due to (1) different settings and heterogeneity within the primary studies, (2) lack of manualisation of treatment programmes and (3) insufficient evaluation of client-oriented outcomes. IMPLICATION FOR RESEARCH: It is recommended to manualise client-centred standardised modules of a stage-specific occupational therapy-led training of activities of daily living and to pilot-test this intervention programme in a feasibility study. If this trial results in a set of reliable and valid client-oriented outcome measurements applicable within the German care context and in a feasible treatment programme well accepted by stroke patients and their treating occupational therapists, a large-scaled randomised clinical trial in terms of comparative effectiveness research may follow.

Towards comprehensive and transparent reporting: context-specific additions to the ICF taxonomy for medical evaluations of work capacity involving claimants with chronic widespread pain and low back pain.

BACKGROUND: Medical evaluations of work capacity provide key information for decisions on a claimant's eligibility for disability benefits. In recent years, the evaluations have been increasingly criticized for low transparency and poor standardization. The International Classification of Functioning, Disability and Health (ICF) provides a comprehensive spectrum of categories for reporting functioning and its determinants in terms of impairments and contextual factors and could facilitate transparent and standardized documentation of medical evaluations of work capacity. However, the comprehensiveness of the ICF taxonomy in this particular context has not been empirically examined. In this study, we wanted to identify potential context-specific additions to the ICF for its application in medical evaluations of work capacity involving chronic widespread pain (CWP) and low back pain (LBP). METHODS: A retrospective content analysis of Swiss medical reports was conducted by using the ICF for data coding. Concepts not appropriately classifiable with ICF categories were labeled as specification categories (i.e. context-specific additions) and were assigned to predefined specification areas (i.e. precision, coverage, personal factors, and broad concepts). Relevant specification categories for medical evaluations of work capacity involving CWP and LBP were determined by calculating their relative frequency across reports and setting a relevance threshold. RESULTS: Forty-three specification categories for CWP and fifty-two for LBP reports passed the threshold. In both groups of reports, precision was the most frequent specification area, followed by personal factors. CONCLUSIONS: The ICF taxonomy represents a universally applicable standard for reporting health and functioning information. However, when applying the ICF for comprehensive and transparent reporting in medical evaluations of work capacity involving CWP and LBP context-specific additions are needed. This is particularly true for the documentation of specific pain-related issues, work activities and personal factors. To ensure the practicability of the multidisciplinary evaluation process, the large number of ICF categories and context-specific additions necessary for comprehensive documentation could be specifically allocated to the disciplines in charge of their assessment.

Designing interactivity on consumer health websites: PARAFORUM for spinal cord injury.

OBJECTIVE: This paper addresses the issue of interactivity on health consumer websites powered by health organizations, by presenting the design of PARAFORUM, an interactive website in the field of spinal cord injury (SCI). METHODS: The design of PARAFORUM is based on different streams of research in online health communication, web-based communities, open innovation communities and formative evaluation with stakeholders. RESULTS: PARAFORUM implements a model of diversified interactivity based on individuals with SCI and their families, health professionals, and researchers sharing their expertise in SCI. In addition to traditional health professional/researcher-to-consumer and peer-to-peer interactions, through PARAFORUM consumers, health professionals and researchers can co-design ideas for the enhancement of practice and research on SCI. CONCLUSION: There is the need to reflect on the conceptualization and operationalization of interactivity on consumer health websites. Interactions between different users can make these websites important platforms for promoting self-management of chronic conditions, organizational innovation, and participatory research. PRACTICE IMPLICATIONS: Interactivity on consumer health websites is a main resource for health communication. Health organizations are invited to build interactive websites, by considering, however, that the exploitation of interactivity require users' collaboration, processes and standards for managing content, creating and translating knowledge, and conducting internet-based studies.

Content validity of the comprehensive international classification of functioning, disability and health (ICF) core set for low back pain from the perspective of physicians: a Delphi survey.

OBJECTIVES: The 'Comprehensive ICF Core Set for low back pain (LBP)' is an application of the International Classification of Functioning, Disability and Health (ICF) and represents the typical spectrum of problems in functioning of patients with LBP. The objective of this study was to validate this ICF Core Set from the perspective of physicians. METHODS: Physicians experienced in the treatment of LBP were asked about the patients' problems, patients' resources and aspects of environment that physicians take care of in a three-round survey using the Delphi technique. Responses were linked to the ICF. RESULTS: Seventy-one physicians in 36 countries named 707 concepts that covered all ICF components. One hundred ninety-three ICF categories were linked to these answers. Three ICF categories were not represented in the Comprehensive ICF Core Set for LBP although at least 75% of the participants have rated them as important. Twenty-six concepts were linked to the not yet developed ICF component personal factors and 21 issues were not covered by the ICF. DISCUSSION: The high percentage of ICF categories represented in the ICF Core Set for LBP indicates good content validity from the perspective of the physicians. However, some issues were raised that were not covered and need to be investigated further.

Aspects of functioning and environmental factors in medical work capacity evaluations of persons with chronic widespread pain and low back pain can be represented by a combination of applicable ICF Core Sets.

BACKGROUND: Medical work capacity evaluations play a key role in social security schemes because they usually form the basis for eligibility decisions regarding disability benefits. However, the evaluations are often poorly standardized and lack transparency as decisions on work capacity are based on a claimant's disease rather than on his or her functional capacity. A comprehensive and consistent illustration of a claimant's lived experience in relation to functioning, applying the International Classification of Functioning, Disability and Health (ICF) and the ICF Core Sets (ICF-CS), potentially enhances transparency and standardization of work capacity evaluations. In our study we wanted to establish whether and how the relevant content of work capacity evaluations can be captured by ICF-CS, using disability claimants with chronic widespread pain (CWP) and low back pain (LBP) as examples. METHODS: Mixed methods study, involving a qualitative and quantitative content analysis of medical reports. The ICF was used for data coding. The coded categories were ranked according to the percentage of reports in which they were addressed. Relevance thresholds at 25% and 50% were applied. To determine the extent to which the categories above the thresholds are represented by applicable ICF-CS or combinations thereof, measures of the ICF-CS' degree of coverage (i.e. content validity) and efficiency (i.e. practicability) were defined. RESULTS: Focusing on the 25% threshold and combining the Brief ICF-CS for CWP, LBP and depression for CWP reports, the coverage ratio reached 49% and the efficiency ratio 70%. Combining the Brief ICF-CS for LBP, CWP and obesity for LBP reports led to a coverage of 47% and an efficiency of 78%. CONCLUSIONS: The relevant content of work capacity evaluations involving CWP and LBP can be represented by a combination of applicable ICF-CS. A suitable standard for documenting such evaluations could consist of the Brief ICF-CS for CWP, LBP, and depression or obesity, augmented by additional ICF categories relevant for this particular context. In addition, the unique individual experiences of claimants have to be considered in order to assess work capacity comprehensively.

Motor imagery experiences and use: asking patients after stroke where, when, what, why, and how they use imagery: a qualitative investigation.

Background. A framework on where, when, what, why, and how to use imagery from sports psychology was explored whether it can be applied in patients after stroke in their chronic stage. Methods. Eleven patients (ages 31-85, 3 females, 1.3-6.4 years after stroke) were interviewed. Semistructured interviews were conducted before and after a two-week MI intervention period with six MI sessions. Information was obtained regarding experiences and knowledge of MI, and the evaluation of an MI practical example. The coding scheme was based on the framework and a hierarchical categorisation. Results. Information regarding domains where, when, what, why, and how to use imagery was addressed. Patients imagined themselves as healthy individuals, did not focus on surroundings during MI practice,and reported to use positive imagery only. After MI training, patients became more flexible regarding their location and position during MI practice. Conclusions. MI became an automatic process, and patients did not need specific concentration and quietness as mentioned in the first interview. Patients recommended daily MI training and began to transfer MI to practice movements that were affected by the stroke. In contrast to sports, patients did not talk about how MI was triggered rather than how MI was designed.